Severe ventriculomegaly diagnosed at 20 weeks

[Sep2299]

I posted this yesterday (copied and pasted below) in the main pregnancy board and was advised to try posting here...has anyone been through something similar to my situation?

"This is where there is excess fluid on the baby's brain, which is usually only picked up at the 20 week scan, not the 12 week scan.

The left ventricule is 7mm which is normal (should be 10mm or under) however the right ventricule is 19mm which is classed as severe.

Waiting for a more in depth/detailed ultrasound with a specialist to see if there are any other abnormalities, however nothing else was picked up on the 20 week scan apart from this excess fluid on the brain and the shape of the head.

Can't help fearing the worst...but hoping there are some positive stories out there?"

Update: Got MRI report back that said- absence of the cavum septum pellucidum and corpus callosum. Moderate to marked colpochephalic configuration of the ventricle. The neurosurgeon said everything looked normal and just to check for head measurements. So now why is the MRI report saying differently? The report was not ready when neurosurgeon reviewed the MRI images. Not sure who to believe! Meeting with perinatal dr Monday. Neuro's notes on report did say 'low visibility of corpus callosum.' So maybe just hard to see? I would like to believe the neurosurgeon over the radiologist who wrote the report but it's still worrisome.

Hi @veronicalynn. I'm so sorry to hear this, it's pretty much exactly what happened to us except we were lucky that they reviewed the MRI results straight after our scan so there was no waiting. The MRI is as accurate as you can get, in my opinion and experience the neurosurgeon was incredibly wrong to not have reviewed the MRI first.
It is very rare that severe ventriculomegaly is isolated, and that's what your baby and mine have. I was utterly gobsmacked by your first update, and sever VM should not be taken lightly. I would recommend that you read up the systematic reviews available on the internet, I found them more informative and helpful than the doctors. Frankly this is so rare that by the end I knew far more than them.
What you can't know of course is the outcome. Honestly it can vary from anything from severe disabilities to a normal baby - no doctor can tell you that, it's just wait and hope. I'm here if you need to talk x

*reviewed the MRI report first

Neurosurgeon reviewed the MRI images right after, but not the report from the radiologist. That wasn't available until a few days later.

Sorry to hear your update. Not the news you were hoping for at all.
There is always hope though, as the previous poster has said the spectrum of of possible outcomes is huge and not easy to predict.

Hello Mums. Sorry in advance about eventual mistakes in my English, I'm from Hungary. Since the last days of february, I'm searching for answers, info, data, personal experiences, forums...desperately. I'm expecting my second baby boy, and at the 19 wk anatomy scan my doctor found unilateral borderline ventriculomegaly of 9,5mm, said not to worry much as it is high end of normal range, but immediately sent me for level 2 scan in another city's bigger hospital. There the measurement was confirmed 10mm, mild vm. I had torch test and amnio on the spot, and went back to control 2 weeks later. The results came back negative, the left ventricle was 11mm. Now this week, in my 23, they measured 10mm - I thought wow my prayers were heared, as I've cried every day - BUT now both lateral ventricles are involved, so diagnose is mild bilateral vm now. Devastated. So this means it was not decreasing, but got somehow equal in size, with one size increasing 5mm within such a short time. I am very worried, because in my country it is not general to make fetal MRI. (yes, we're in some way back in the 19th century). And genetic counseling means someone tells you: Yes this is a problem, don't know small or huge, let's see next time. That's all. No surveys, no statistics, no case studies available. 😞 please help me with your experiences.

Hi Gabriella. I'm sorry that you are going through such a hard time. The great news is that with mild ventriculomegaly like your baby, the chance of it having no impact is 97% according to a number of different studies. It sounds like it isn't progressive which is great. So whilst it must be such a stressful time for you there is so much hope x

Ps there is no difference in outcomes between bilateral or unilateral in the main so long as it continues to be mild x

obgyn.onlinelibrary.wiley.com/doi/abs/10.1002/uog.13364

This is a great read

Thank you very much for your kind answer and support! And also for the useful read. Now I know much more about our situation. I was so afraid, that bilateral form is much more serious. And I am still afraid that despite the numerous u/s and after all the other antenatal tests, they miss the reason causing it because of not making fetal MRI. So after birth they will tell us isolated vm is misdiagnose. My other fear- can stabile vm turn into progressive later in the pregnancy?

Sorry I missed your reply. Yes stable can turn progressive but it is very unusual from what I have read x

So it can turn so...😞 into several vm or hydrocephalus. Oh gosh. My next u/s follow up is on Thursday, and I have so much fear. Anyway thank you for the answers!!!

I will be thinking of you x

@iamloading Thank you for thinking of me! Yesterday I had my next follow up ultrasound, and fortunately it has not turned into progressive yet, in fact, still stable 11mm. Now the next u/s will be 6 weeks later, I will be 31 weeks by then. An eternity 😞

@veronicalynn I am in same boat 22 weeks scan was ok but at 33 weeks baby's vent sized 14 and 20 mm. Just curious about how did it go for you? How's your little one doing?did she have shunt?

My daughter is 2 months old doing great so far! She was diagnosed as missing part of her corpus callosum which is why the large vents. No pressure, so she has not needed a shunt. We are monitoring her head size though just incase. There are Facebook groups for hydro, ventriculomegaly and corpus callosum. I've found those groups very helpful. I'm sure you're going through a rollercoaster of emotions right now. I would join those groups. The dr's tell you worst case scenario and scare the crap out of you! Some kids are affected by the large vents, others are not. It all depends on what else is going on (if there are other brain abnormalities, pressure, etc.). Good luck and congrats on your pregnancy!

Thank you for quick reply. My LO has no issue with other parts of his brain. It is left ventricle which is 20mm I am concerned about. Yes you are right that Dr scared me a lot. I have joined few groups on Facebook. I will post my updates soon. Thanks once again for quick reply. I am so glad that your little one is doing great

Hello,

Had 20 week scan yesterday, having a baby girl.

Everything ok on scan apart from VP enlarged and measuring 12.2mm. We are to be re scanned on Thursday and are so so worried.

Hoping to read some positive stories xx

Hi @MrsE114 I've been Weber you are and my heart goes out to you. Not a positive story from my side I'm afraid but happy to answer any questions that you might have x

Thanks for replying iamloading. Do you mind me asking what your experience involved? Thanks

Hi @MrsE114 I'm just wary of scaring you as we had bad luck followed my more bad luck, so I really hope that yours won't go the same way.
Essentially her vents were 13.5 at the 20 week scan. These were then put at 12.5 at a scan at the specialist unit a week later. A week after that we had an MRI to see if it was isolated. Essentially 12.5 isn't the end of the world but you want it to be isolated and non progressive. Statistically that is also by far the most likely outcome, and vents of under 12 have a 96% chance of having a "normal" baby with no disabilities.
The MRI showed that it was isolated (great) but had jumped up to 16mm. Dreadful progression in a week.
Anyway a week after that we had another scan and they were now 18 and there was barely any brain visible - just this horrific mass of fluid. We were told with the rate of progression that she had very little chance of any quality of life.
At 25 weeks we took the horrendous decision to TMFR and I gave birth to her 4 days later. Without doubt the worst time of my life but like I say we constantly were the bad end of the statistics. It's only something like 12% of cases that progress like ours. Most stay stable or even correct themselves.
Luckily the post mortem showed no genetic cause and I am now 37 weeks pregnant again with our little rainbow.
Here if you have any questions as I think I read every medical document going during those awful weeks. Please push for an MRI scan as it is by far the most accurate and detailed way to assess your baby x

I've had my 20w scan and found my little girl has severe Ventriculomegaly. Been told maximum fluid in brain should be 15mm. One side is 16.5 and the other is 22.5. The midline of the brain tissue has also gone due to pressure from the fluid, so the brain is not separated into two anymore and the outside of the brain tissue is very thin. We've been advised to terminate but its easier said than done!
Still in such shock and devastation to why this is happening to my baby girl. Please can someone give their experience?
Anything would be appreciated right now!

@molliejx i had to terminate in April at 24 weeks due to a brain abnormality. It was different to your diagnosis but ultimately following MRI, post mortem and full (clear) karoytype we knew we did the right thing. The brain is a complicated structure and unfortunately doesnt magically get better. If you have been advised to terminate (as was i) the experts will be advising this with the best intentions.

I can't give you any advice but i can share that although it was the hardest and most heart breaking decision we have ever made, we know we did the right thing to save our beautiful boy from pain and suffering.

Please DM me if you need to chat and wish you lots of love and strength for the days and weeks ahead x

Hi @Molliejx We had exactly the same as you. The vents shouldn't be any bigger than 8mm, over 15mm is classed as severe with a very poor prognosis. You can read about my experience on this thread, my daughters vents were 18/19. Have you had an MRI yet? Feel free to message me if you want any advice or me to share more of my experience. I'm so sorry for what you are going through

@iamloading
Thank you for your reply. I have read your story and I am so sorry to hear you had all of that!
The specialist has said due to pressure, the midline of the brain tissue has gone and the outsides of the brain tissue is getting thin also.
I feel like terminating would be the best route to take as i would hate for our little girl to go through any suffering. Its just such a final decision and although you hope for your 9 months pregnancy to go fast, i just want it to slow down so we could see what could happen in the future for her. Its so heart breaking.